This morning, the New York Times published an op-ed by actress Angelina Jolie discussing her decision to get a preventative double mastectomy.
Jolie is being hailed as an inspiration for coming forward with this story, which marks an amazing turn-around for a woman who used to make out with her brother and carry vials of her then-husband’s blood around her neck.
The actress decided to take the preventative measure after genetic testing determined that she had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer.
Now, Jolie is a movie star married to another movie star, so the decision to undergo an expensive procedure did not deter her like it will many women in the United States.
Not the mastectomy. Insurance usually covers that if the patient presents such risks. No, the expensive procedure is the initial genetic testing. And the Supreme Court might be able to do something about that in the next couple of months…
The genetic testing that caught Jolie’s cancer risk involved extracting the BRCA1 gene. BRCA1, along with BRCA2, can be tested by a process created by a company called Myriad Genetics. Along with creating the process, Myriad scored a patent on the test. As you’d expect the price of the test is inflated by the government-authorized monopoly that is a patent. What many may not know is that patented genetic testing is often excluded from health insurance coverage because of this high cost:
Most women who want testing must pay its price — $3,340 for the breast cancer analysis and $700 for an additional test, called BART, which picks up a genetic link in about 10% of women who test negative the first time. Myriad officials say about 95% of its patients receive insurance coverage, often without co-payments, so most patients pay only about $100.
Myriad’s claim that most patients pay very little is belied by both the persistently high number of uninsured women in America and the fact that the oft-villified Affordable Care Act is pretty much the only thing allowing Myriad to use the word “most.” Among the myriad (ha!) requirements of the Affordable Care Act, one made insurance companies cover testing for the BRCA1 and BRCA2 genes.
But there’s a catch, because of course there’s a catch. A number of health plans were “grandfathered” by the Affordable Care Act and still don’t need to provide coverage.
Grandfathered insurance plans are those that existed on or before March, 23, 2010, the date the Affordable Care Act was enacted. In 2012, only about half of Americans who received health insurance from their employers were enrolled in grandfathered insurance plans, Myriad Genetics said.
Obviously more and more people are moving into newer plans every day, but a hefty portion are stuck without affordable access to a pretty significant test, and insurance companies are paying top dollar for a test that pretty much just looks at a gene.
And that’s where the Supreme Court comes in. In Association for Molecular Pathology, et al. v. Myriad Genetics, Inc., the Supreme Court heard arguments from both sides on the patentability of human genes. Despite some interesting arguments from Myriad, the Supreme Court seemed skeptical of a company’s claim to patent a naturally occurring gene just because they found it first. Justices Scalia and Alito expressed concern over whether a genetics company would have the incentive to conduct research it its potential profits were merely obscene instead of gloriously obscene. Meanwhile the other justices (except for Thomas who continued his trend of not being engaged in the actual act of “judging”) expressed concern over patenting a human gene.
Chief Justice John Roberts said it was not akin to patenting a baseball bat extracted from a tree, since considerable work is involved in making the bat.
“You have to invent it,” Roberts said of the baseball bat. When it comes to the isolated gene used to find mutations that can cause breast or ovarian cancer, he said, “You just have to snip it off.”
A decision is expected in June.
Fundamentally, the problem is the over-reliance on patent law to incentivize innovation. Economist Tyler Cowen, writing about treating pandemics in the Times recently, suggested the government would be more efficient if it issued cash rewards for innovation in certain cases rather than relying on patents. That would seem to better fit here by addressing the economic concerns of Justices Scalia and Alito without ignoring that patent law actually requires something more than finding something in nature.
And it would have the added benefit of helping women that may have a significant cancer risk get the facts and make proactive decisions for themselves and those that rely on them. Even if they don’t have movie star incomes and movie star husbands.
Women like Jennifer Aniston.
My Medical Choice [NY Times]
Supreme Court Skeptical of Patent on Breast Cancer Gene [USA Today]
Breast Cancer Genetic Testing Gets Covered by Health Care Reform [Mother Nature Network]
Association for Molecular Pathology, et al. v. Myriad Genetics, Inc. [Legal Information Institute]
Guest Post: Nine Reasons why the Supreme Court Should Side with Myriad and Affirm the Patenting of Isolated Human Genes [Patently-O]